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Care.data delay is not the end of the issue

Times_caredataIn a campaign victory for Big Brother Watch, medconfidential and others, the care.data scheme has been delayed for six months.

This is not the end of the issue. We have significant ongoing concerns regarding the care.data scheme, both in terms of how patients have been told about what is happening and the long term privacy implications of creating a new database and releasing data that could be used to re-identify patients.

We welcome the fact that NHS England has recognised its efforts to communicate the scheme have been inadequate, something we have repeatedly warned about, not least the use of a junk mail leaflet to households that did not mention any of the risks involved.

Simply, however, NHS England had one job – to ensure patients and GPs were properly aware of the scheme and could make an informed choice about participation. Despite more than a year to achieve this, they have totally failed to do so. NHS England has serious questions to ask about its strategy that has tried to railroad through a significant change in how our medical records are used.

According to NHS England, the delay will: “ensure that concerns are met … to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to.”

In recent weeks, individual GP’s, the Royal College of GP’s, the British medical Association and patient watchdog Healthwatch England, among others, have all voiced their concerns about the scheme.

The simple point is that NHS England failed to properly communicate to patients or GPs what this new database involves, how it affects medical records and what the risks are. The scheme’s benefits are no justification for not properly informing people what will happen and a delay is the right thing to do to maintain public confidence and ensure people have an opportunity to opt-out.

There are few people who don’t acknowledge the benefits of medical research, yet patients have shown that they will not be complacent when it comes to who can access to their medical records. Our medical records contain some of our most private information and any changes to how they are used should not be rushed into. NHS England should now write to patients individually, including an opt-out form, explaining the scheme and allowing people to make an informed choice about what happens to their medical records.

In future, it should the the norm that these kind of changes are done on an opt-in basis. We expect such a situation would mean a far more thorough effort from NHS England to keep the public informed, while also fulfilling the principle of giving patients control of their medical records.

You can continue to-opt through faxyourgp.com to opt-out, or use one of the letters here.

Posted on by Big Brother Watch Posted in Databases, Information Commissioner, NHS

7 Responses to Care.data delay is not the end of the issue

  1. Anon

    Taking peoples’ most intimate and personal data without their consent does not justify the care.data programme. Data taken in this way will never have integrity.

    There are so many misleading statements being made in the media about the current hospital data that HSCIC gather. These are also identifiable data and these are shared in identifiable form but we are led to believe that these are anonymised. A lot of patients are not informed that their identifiable hospital data will be shared so why would we expect HSCIC to do anything different when it comes to our GP records?

    Care.data is the worst idea ever and it should be scrapped. Have they considered the cost of care to the NHS once patients stop sharing information with their GP? If they won’t scrap care.data then the very least they should do is make it an opt in scheme.

    There is a very good reason why most of Care.data is not subject to the laws of data protection – it would not be legal.

  2. Anon

    On 3.2.14 I rang my GP surgery to opt out. The receptionist didn’t know what I was talking about & put me on hold. Presumably she spoke to the Practice Manager – ‘did I want to opt out of both Primary Care and Secondary Care [records sharing?]?’
    “We’ll sort something out so it gets put in your notes.”
    Didn’t feel terrifically reassured by this this!

  3. Anon

    It is not right that anyone’s details are sucked up out of the GPs Practices without 1 the Patient being told where and what the NHS is going to do with them 2 The patients should be able COMPLETELY, not anonymously, totally to opt out, “selfish” or not 3 this will now destroy Patient/GP confidentiality 4 the records are not accurate so will not do what the NHS wants them to do anyway. They say that they would have discovered Stafford hospital sooner but they already suck up info from hospitals. Staffs was blown open by a whistle blower,

  4. Anon

    They are taking advantage of the technical complexity of the sharing arrangements and providing disingenuous statements regarding the benefits of such a scheme.

    I made sure I wrote to my doctor to opt-out using both codes, but many people I know know nothing about care.data and I cannot help but feel that is how it was meant to play out.

    We should not have to be continually on our guard regarding the sharing of our personal data. The default position should be no sharing without explicit consent.

  5. John

    “NHS England had one job – to ensure patients and GPs were properly aware of the scheme and could make an informed choice about participation. Despite more than a year to achieve this, they have totally failed to do so. ”

    Let’s hope the opposition narrative stays focussed on that point, because frankly it’s hard to believe that the “plan” was anything other than a charade to inform people and allow them to opt out.

    The obstacles which have been put in the way of anyone wanting to opt out (complete lack of online opt out, being forced to physically VISIT a GP, being forced to fill out bloody forms and return them) makes it hard to argue that anything else was the intention all along, which means they were being deceptive.

    And that as we know doesn’t play well with the public, especially when it’s the Government and Public Sector behind it.

  6. anon

    Please ask for clarity on the sale of medical records overseas – after HSCIC set up a memorandum of understanding with the US this suggests it could be a very real possibility. http://care-data.info/ section 15 has more.
    Also ask for clarity on HSCICs role, This 2012 video entitled “Exploiting the potential of Health and Care Data” http://www.hscic.gov.uk/ourrole
    describes one of their roles as “to make that data freely available for others to turn into actionalble business intelligence” – do they still see this as their role? I am definitely not interested in sharing my data for that!

  7. Sue C

    I opted out and physically took the forms to my GP surgery.

    But even so, my relationship with my GP will be affected because I’m not sure who is going to access my records. I will either not consult my GP at all, or if I have to for some compelling reason, I will be very careful what I say.

    This mistrust has arisen simply because the notion of care.data has come to light, and it won’t make much difference to my attitude even if the say they are going to scrap the idea of care.data.

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